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Nursing and Midwifery Council. The code. 2018. https// (accessed 9 February 2024)

Respecting patient autonomy: legal and professional considerations

02 March 2024
Volume 29 · Issue 3


In this month's Policy column, Iwan Dowie explores patient autonomy – a concept largely embedded within the community nursing setting. Through legal cases, a history of laws relating to patient autonomy are presented and its implications for community nurses discussed.

Patient autonomy is seen today as a cornerstone of good community nursing practice (Beauchamp and Childress, 2013). The concept of patient-centred care is largely embedded in working practices, and especially in a community setting, as community nurses are invited into people's homes to undertake care and treatment. As part of recognising the autonomy of a person, community nurses are always encouraged, through professional guidelines and the Nursing and Midwifery Code (2018) to seek consent before any procedure is performed, thus, adhering to the principles prioritising people and person-centred care.

Patient autonomy is not a new concept. At the turn of the 20th century, the legal case of Schloendorff v New York Society Hospital [1914] established a general principle that a person of sound mind (today, we would state this as someone with mental capacity) is entitled to agree or to refuse any treatment relating to their own body. In this case, Mary Schloendorff had adamantly refused treatment for a surgical procedure to remove a fibroid tumour; however, she did consent to an examination under anaesthesia. While under anaesthesia, the surgeons removed the tumour and later Mary developed gangrene in the left arm, resulting in the amputation of some of her fingers. To some readers, it may be seen that the surgeons were acting in the best interests of the patient. However, the overarching principle that people have the right to refuse or make unwise decisions is an essential part of respecting patient choice. This principle was reinforced in legal cases in England and Wales later on; for example, in the case of St George's Healthcare Trust v S [1998], a woman (S) refused an induced delivery of her baby, despite knowing the risk her refusal had to her life and her baby. The doctors and the social worker admitted S against her will for assessment via the Mental Health Act 1983. The judgment of the court was quite explicit in that an unborn child was not a person separate from the mother, but a part of her, and the unborn child's need for medical assistance did not prevail over her rights as a person to make an autonomous choice in regard to her own treatment. In the case of Re C [1994], even if a patient had an established mental health condition (C was diagnosed with schizophrenia), a person still has the right to decide treatment unrelated to their mental health condition; in this case, it was the refusal for an amputation of a gangrene foot, which, if left in place, had a high probability of death. C was able to demonstrate that he understood what was said to him; he was able to retain the information and was able to weigh up the risks, so was judged by the court to be mentally competent to make a valid decision.

Despite these rulings, patient autonomy could still be compromised due to concepts such as therapeutic privilege. While patients had to be provided with ‘sufficient information’ – a premise established in the case of Chatterson v Gerson [1981] – doctors had the right in law to withhold information if they believed it was necessary to do so for therapeutic reasons. In the case of Sidaway v Board of Governors of the Bethlem Royal Hospital [1985], Amy Sidaway was to undergo an operation on her back. The doctors did not disclose a 1% risk of paralysis to Amy, citing that it would have been psychologically detrimental to her if she were to be told of the risk. The court agreed with the doctors' position that if any other doctor would also have withheld the information from the patient, they had met the standard expected of them (in line with the Bolam principles of 1957). The court viewed the risk as ‘insignificant’, thereby not justifying the need to disclose it. Yet, the material consequences for the patient could be severe, and in this case, Amy did indeed suffer paralysis because of the operation. Cases such as Amy's illustrated the power imbalance between the patient and the healthcare professionals. In 2015, a landmark ruling was made by the UK Supreme Court in the case of Montgomery v Lanarkshire Health Board, which allowed for patients with full mental capacity to make a true autonomous decision in relation to their own treatment; this meant that all material risks have to now be disclosed to the patient. When examining consent issues, it is no longer permissible for community nurses to use the Bolam principles to justify their actions (where the actions of the community nurse are judged to be of a sufficient standard (or not) by other community nurses), but instead, it is for the prudent patient to determine. The prudent patient test is as follows: if the ordinary patient would expect all the material risks to be disclosed to them in relation to a proposed treatment, this is the minimum standard expected of the community nurse. Anything less can result in the community nurse being held negligent for their actions (or omissions).

Respecting patient autonomy is also a statutory requirement. Under principle 3 of the Mental Capacity Act 2005, all persons who have full mental capacity are entitled to accept or refuse treatment, even if this refusal would be seen as unwise. Even after a loss of a person's mental capacity there is a need to take into account prior wishes and beliefs, and if the mentally competent person had made a valid advanced decision, community nurses and other healthcare professionals have to abide by the patient's decision.

However, this rush by the courts to enshrine patient autonomy pontentially has some significant challenges. Patient autonomy is generically associated to some extent with patient choice, often with various pathways that can be taken to manage, or indeed, cure their condition. However, there is a danger of operating a ‘menu’ system of healthcare that can add confusion for the patient, who, in most parts value the community nurse as the expert in medical, nursing and caring matters. Paternalism (or ‘the community nurse knows best’ approach) is often viewed as a negative stance or attribute, and in recent years, rarely has a defence of paternalism been seen in the myriad of medical and nursing journals. Yet, paternalism is one of the oldest approaches in medical practice, and its overarching principle of primum non nocere (first, do no harm) cannot be said to be a ‘bad’ ethos (Beauchamp and Childress, 2013). Beneficence and non-maleficence are often regarded as being integral to paternalism – that a community nurse has to consider the best interests of the patient, but also to do no harm, further underlining the value of the Hippocratic Oath. Nevertheless, despite good intentions, paternalism provides permission for the community nurse to make all the decisions in relation to patient care if the decision is in accordance with what the nurse perceives to be in the patient's best interest. For this reason, nursing has moved away from a paternalistic attitude (partly because of the law demanding this of the community nurse), also partly as a result of the patient becoming more aware of medical/nursing matters, due to the increasing spread of the internet, and the rise of legal firms specialising in legal negligence. If anything, the modern world and its increasing reliance upon social media, has allowed patients to understand and challenge nursing practice. Thus, the concept of patient autonomy can no longer be ignored, even if this desired outcome for the community nurse.

Nevertheless, respecting patient autonomy has its limitations, from both a legal and ethical perspective. Patients with full mental capacity can be forced, in some circumstances, to accept treatment; for example, under the Public Health (Control of Disease) Act 1984, it is perfectly permissible to quarantine a person if they are suffering from an infectious disease listed as a public health concern. The general right for a patient to refuse treatment required to control disease is relinquished as part of addressing societal safety. Several restrictions were also placed upon the public during the COVID-19 pandemic, through the passing of the Coronavirus Act 2020. The Mental Health Act 1983 also allows for the detention of people who are at significant risk of harm to themselves or to others. For admission for treatment or care through the Mental Health Act, two doctors can decide if a person is to be detained, and often, the threat of detention can result in a patient accepting treatment as a ‘volunteer’. As Willis (2006) has stated, it is recognised for a multiplicity of factors that there is a lack of agency for some individuals to be able to take a greater path toward self-determination, especially those in vulnerable groups. Consequently, it may lead to one sector of society ‘dominating’ the other – for example, the traditional domination of the medical profession in healthcare. Once dominance is achieved, individual sovereignty (or patient autonomy) for many individuals is often negated and indeed, abused (Browne, 2001). The community nurse has to respect the rights of patients to make decisions for themselves, often using a co-production approach, which was set out in the Department of Health (2012) consultation paper ‘Liberating the NHS: No decision about me, without me’. In this paper, it was suggested that community nurses and other healthcare professionals were no longer to make decisions of care without involving the patient with those decisions; while it is recognised that for some patients there maybe reduced capacity to be able to make a fully informed choice, this does not negate the need of the community nurse to work alongside the patient, to ensure patient autonomy is respected as much as it can be. The law has shifted the pendulum very much toward respecting patient choice and decision making, especially via the Montgomery v Lanarkshire judgment, and to ignore this fact, potentially places the community nurse at significant professional and legal risk.